Results from scan

Results day is always a strange day. It's stressful, and the build up to it is also stressful. Conversation is normal. Shall we go for breakfast? Do you want to go for a coffee before we find out? What jobs have to be done after the hospital, and on the surface all is normal, but there is noting normal about results day.

You sit in the waiting room and talk to the nurses that now have become friends, you try and read there faces, do they know? I drive myself silly at this point. 

So to those new on my blog, and to some of you that have found you have pancreatic cancer, I had a whipples procedure just over 3 years ago, and that worked, but it came back 6 months later, I am on my 4th time that pancreatic cancer has been visible. 

I have just finished my 4th set of chemo, and the results from the scan and looking at my tumour count, right now, there are no signs of any tumours. My tumors count as been up to the 3000 mark, anything below 34 is normal, right now it's 18.

The oncologist and nurses and all involved have managed it again, of course I am very thankful.

So life goes on, and with that, you walk way from the hospital, and all goes on as normal, I am currently looking for an holiday,  it is much needed! And I am pushing for a business's award, to fund a dream of mine to have a cafe, it's a long shot, but I have nothing to lose! I was on local radio a couple of days ago and local TV today but it seems I have slipped down to number 27th, so please if you could spare 2 mins and just click the VOTE button, that would be great, so thank you.

https://www.vmbvoom.com/pitches/the-allotment

Stand up for cancer may be coming to see me next week, and hopefully will be helping towards there campaign this year.

Also, they are using the billboard picture again for cancer research around the country from June.

Thanks for all of your lovely messages, and thank you for your support too. 

Latest (April 2016)

I haven't done an update for ages! I am sorry, it's been quite hard this time around. I have recently found out I am diabetic, this made me quite ill and I thought it was the chemo.

So, to go back! I had to go back on chemo again, they found 9 tumors on the liver. I also came off Facebook, there was a reason, but I know some people thought, oh where is he gone! I didn't want to make a big public statement about coming off and then a week later looking a fool as I would be back on!...Hello, I'm back again!

When you are ill, you don't leave the house, and the view of the outside world for me was via Facebook, now, I know there are more to people than what they put on Facebook! All I put on Facebook is things about cancer or my business, I like to think there are more to me than this (mmmm... Or maybe not!) When you see other peoples updates on Facebook, and you use Facebook to a window of the world, you suddenly get a very dis-jointed view of that world, I realised this was not an healthy way to live, and I also knew I still had a few weeks left of chemo, so I choose to come off it for a bit, I was turning cynical, and I did not want to do that.

Also, I knew I had a few weeks to do more on chemo, and to do this, I had to get my head down and get on with it.

This was the 4th cycle of chemo, the first few days are hard, but it gets easier. I have had 2 scans recently, one for the Proff in London to see if I could be ablated again, (tumor zapped using Nano-technology) and another which I haven't had the results of yet.

My tumor count in my blood, anything above 34 they are concerned about, mine went up towards 3000, but now, due to my oncologists and chemo, it as dropped to 29, they are very happy about this, and use words like amazing to describe the situation. On the scan a few weeks ago the 9 tumors I had had shrunk and only two was visible they have been ablated in London, and I am now waiting to find out the results. 

When it came back a couple of years ago, my doctors said there was nothing they could do, and there was no point of surgery as it would spread quickly, now, due to this unusual situation, I have been told by one of my oncologist that they are now looking into surgery, I am not sure what the outcome of this is, as I haven't seen my main oncologist yet, but I have contacted the Pancreatic cancer UK charity, and they have done looked into it and sent an email to me of questions I should ask, (Thanks Dianne) they have done amazing things, and really helped me, this surgery has been done before in China, so there are records of it, I just have to see what is offered. 

So... All is good!

This may sound strange, but I think cancer as given me more confidence! I know it shouldn't be that way, but I think it has! Don't get me wrong, I am feeling abit down right now and I also know that is due to the situation, but, well! If I can deal with this, I can deal with most stuff! 

And what better time to start a cafe! 

The competition is the Richard Branson Voom. 

If you could vote for me, that would be great! Here is my pitch... https://www.vmbvoom.com/pitches/the-allotment

Thank you..

https://www.vmbvoom.com/pitches/the-allotment

Latest

IThanks to all who have wished me Happy Birthday, I'm not that well with chemo, and still in bed, but just wanted to say thank you....

I wrote this a few days ago.

I have been a bit quite on the bloging recently.

There as been so much in the news about the tragedy of Paris, that it felt unaproperate writing about my issues.

But thinking about it, this is the perfect time.  The news is covered in negativity and its easy to believe that the world is one bad place, but its not, not by a long way.

This week friends of mine organised a party where the proceeds go to Pancreatic Cancer UK. They collected over £2000! I still am shocked. 

People, who did not know me where putting £10, £20 pound in the raffle bucket, this was after paying £25 for a ticket and no one complained or questioned it. I hope the guests did not think I was rude, as I felt I spent I  most of the night in a shocked state, at the end of the evening I said to Lisa and Ian (from the Yummy Yank) friends and the hosts I wish we could do it all again, and I would have talked to more people, if you was there, Thank you! i am still in shock.

https://theculturevulture.co.uk/blog/reviews/food-and-drink-reviews/leeds-foodie-scene-fights-pancreatic-cancer/

Pancreatic Cancer UK is one of the charities that have helped me more than once. From the very start I was handed books about pancreatic cancer by the charity.  They offer advice by there dedicated nurses and  helpline, they are also funding projects to find any a cure. PCUK is not a big charity, i know most of the people there by first name, they are a lovely people!, they have helped me a lot. 

I had a phone call from Cancer Research UK, they have been in Leeds doing filming and taking photos for the Christmas campaign, this as involved all of the Oncology department and most of St James’s and the LGI. They asked if they could film or take photos of my next appointment. At first there was Rob and myself, the nurses had just connected my  first round of chemo and the photographer took photos. I had especially ironed my shirt and did my hair in incase they decided to do anything with the pictures. The photographer was really nice, and we was taking other pictures around the hospital, and he kept coming back to me and Rob. Rob had to then go to work, and my Mum took over. By this point the chemo was kicking in, and i was feeling, slurred, and tired, and out of it. I remember he kept coming back. 

At the end of the chemo I unfortunalty took a turn for the worse, and they decided to take me to the upstairs ward and keep me in. I think this was to do with the week before and having blood transfusions and feeling knackered and not sleeping, the photogragher helped as my Mum came up stairs with me as they found a bed.

I am a lot better now, and a week later I was able to come home. They have also given me a week off chemo, so my next one will be this Monday, it is my birthday on Tues but I think we are going to celebrate that this weekend.

Last week, I had a call from Cancer Reseach and they picked one of our photos to be shortlisted to be used, and then today we have been told that our picture has been chosen and will be used for the Christmas campaign on the billboards all around the country. This will be from Boxing day.

I have been involved in the Humans of Leeds project, the photographer who is really nice guy called Z, and I have had some really lovley messages on Facebook

https://www.facebook.com/humansofleeds

Z put the link in for stand up to cancer and it is now over the £700 mark, so yet again, Thank you.

The book writing!!!! its really hard! I have wrote chapter 3 now about 6 times, and now I have scrapped it and started with a totally different direction.  I am trying!

So yet again thank you for your birthday wishes x

Back in hospital

I am writing this from hospital, I had to cancel my chemotherapy due to this.

I have been in St James now for four days now. I have not been feeling too well recently, dizziness, not hungry, sick, etc. I thought it was all a collection of issues all pointing towards the tumours on my liver, and I just thought, well the best thing to deal with them was chemo. So I sat waiting for my chemotherapy to start.

I have met some amazing people through the last 3 years, people that I am so glad I have met, but wish I had met them via different circumstances, some of the nurses have become very good friends.

I have shown so many emotions and states with the NHS staff, sadness, anger, sickness, joy, happiness, laughs, and whatever state I have shown, they have stuck with me, and I am just one of many, I don’t know how the do it.

On a phone call to one of my friends that work in the chemo ward, I was talking about all my issues and complaining about how I was feeling, all different issues that I have had in the last three weeks or so. 

It was my friend who used her knowledge and put everything together and told me I should call the hospital, which I did, I spoke to another friend, and with that it was said that I should come into hospital there and then.

I have been also suffering from tooth pain, and with this I went to the emergency dentist last week and had root canal surgery, to take the pain away I have been talking over the counter pain relief.

If it was not for my friends saying come into hospital to get checked out, I know I would not have done so. Things were a lot more serous than I thought. Everyone around me acted calmly, which in return made me calm, even after I started to be sick blood. I felt ill, I was dizzy, my haemoglobin was 60, normally it should be 120. When this falls your body stops working normally, your oxygen can not be delivered to tissue and cells. 

I had lost 5 bags of blood, I know now this is a lot, I had a lot of internal bleeding, i have been told that   I was heading towards an heartatack.

The doctors decided to change the ports (the pins that they put into your veins) and make them larger, so if needed they could give me a blood transfusion quickly. I was acting drunk, this was due to the lack of oxygen going to my brain. They gave me a blood transfusion, 3 bags to be exact.  

I did not realise how serous all this was at the time, it was only the day after this was apparent. I went for a x-ray, and the reason behind of this was down to the aspirin, which I am not allergic to, and also not taking some tablets which I should have been taking every day (I have learnt the hard way), this gave me two ulcers which had bled. 

This is day four and I am still in hospital, I have an a camera down my throat and surgery to repair this, and I should be back home tomorrow, ready for chemo next week, which as delayed it by a week.

Its nice been called an “inspiration” and to be honest, I used to take the complement, but I realised, I didn't know what it meant, so i had to look it up.

I just do what I get told. I have lost count how many times my friends and the NHS have literally saved my life, and I also know they deserve the title of “Inspiration", and I do joke with them, but behind those jokes, I am so proud that there my friends. 

I feel so much better, and I have had a LOT of messages which I have not replied back to yet, so i wanted to write this up just to thank everyone for there support, I am very thankful, and sorry I haven’t replied back yet.

Its crazy to thing that this has nothing to do with the cancer, and i am glad that is the fact, as all the things that where happening to me like the dizziness and the bleeding can be stopped.

When it comes to the NHS, I have experienced its brilliance so many times, and its brilliance are the people that work within it, I know i will always be indebted. Thank you.

The biology of believe - part two

I was sent my scan results, it has taken an age to get them and due to everything our minds have been so over-loaded it was almost like we could not take anymore so we haven't asked for the results.

All we knew was that they thought that the tumours was on the lining of the liver and there was nothing they could do other than chemo.

I have been asked to have another scan (MRI) to confirm this, and this was the results which I was nervous in asking for.

Unfortunately there are six tumours in the liver, but they are very small but the part they have got wrong is that they CAN be ablated.

So, the way forward is this, six months of chemo, but after three months to get them ablated, hopefully the chemo will get the very small ones and then the ablation can get the rest.

Meanwhile thank you very much for all signing the petition, it has gone up another 4,000 in 2 days! so please sign if not done yet:

Thank you...



https://www.change.org/p/don-t-stop-funding-only-drug-for-pancreatic-cancer/u/13957786

http://www.yorkshireeveningpost.co.uk/news/latest-news/top-stories/leeds-man-whose-cancer-has-returned-for-third-time-fears-lifeline-has-been-taken-away-by-nice-decision-1-7465572

xxxx

The biology of belief

Hello everyone,

Thank you, yet again for all your well wishes, I have been slow on the response which I apologise for. 

Treatment starts next week, so I have been busy having blood tests, getting ports fitted, scans to find out whats happening, all which I am currently waiting to find out the results.

As for now, it is looking like the cancer has gone to the outer edge of the liver, meaning this can not be ablated. This is not the best news, and I am waiting for the results of the latest scan to see if that is the case. If it is the case then my personal plan is this, to simply get rid of it again, can I do it? YES!   It won't be the first time to do the impossible, and I am confident.

I am really enjoying writing the book, and it is making me study certain questions, which I am still working on, but briefly been making notes on the subject.

Who was I before cancer, and who am I now? and what have I learnt. 

This blog item may irate some. I guess the subject matter is about holding up a mirror, and for us all to look at our own lives. What makes me such an expert? Why am I even writing about it?   I hope it does not come come across as arrogant, but if it does, well, thats fine.  I am thankful you are reading it, and I do think its a worthy subject matter to look at and debate, I won't let my ego get in the way.

I am still working on this question, but I want to try and share and write about it here. 

With chemo, it feels like I have to be ill for three to six months to then live for three to six months, and to put in layman terms, it has put me in a situation where I have to really work to then live, so with that I don't want to waste that time.

Some would say, but when me and Rob are sat watching some mindless rubbish on the television in our onesies! and just doing nothing then this is waisting time? It does not matter what you are doing, as long as your enjoying the moment.

I see life differently now, and I would say I see things more clearly, I am not sure if this is down to all the drugs and stress and in fact it is nothing to do with seeing things clearly, but more to do with I haven't got the brain cells any more to retain the information, making it clearer to understand. 

The only thing that would stop me writing the book is my health, and if that doesn't get in the way, then I will write it and I will get it published. I do not question my ability any more. Does this come across as arrogant?  It does not matter, because yet again, if i start to worry what others thought about me, then i would be placing that obstacle in my own way to stop me doing what I want to do. We all have that inner voice, what if this? and what if that?  Well... what if you choose what the inner voice said? How powerful would that be! I have chosen to be friends with my inner voice, we are taking on the world.

If bored some people create their own problems to entertain themselves, without realising it, I think I used to do this myself. This is very counter-productive and there are far more exciting things to do to entertain. 

Do we judge our worth by measuring it via others?  I know someone and they're great, they work very hard and everything that they own in life they have had to put the time in to get it. Then, stage left, someone has entered their lives, and it seems they have materialist items and they're a little bigger and better and with a lot less input. It drives my friend to distraction  and when talking about the subject, they become very animated. They can not see that this effects the way they enjoy all the things they have as it's now about all the things they haven't got. This is pointless, as there is always someone out there that has monetary value, and while your concentrating on the differences, you're not looking in the right direction of appreciating the things you have and the work you have put in to get it.

Fear not only controls us, but also contains us. The fear of letting go of a job that we are in that we don't like, and the consequences of leaving that job, how this would effect us and effect our family? Being in a relationship that we are in but not happy to be in. Fear of moving as the unknown is scary. As long as you survive the consequence, then its all relative.

These days life seems very surreal, but the situations have brought me to this point. I try and live life likes it's a film, I try and make it a great film, I put a power balled in the background - I control that inner voice, I don't let the inner voice control me and I try not to worry.

My treatment and my body sometimes stops me doing what I want to do, which is so frustrating. In the past, it was not my health that stopped me doing what I want to do, it was myself. If someone found a miracle cure for cancer, I would say that I would never live like that again and I would even go as far to say, that if I was cured then  cancer would have been the greatest gift on understanding the true value of life. Is it possible to pass that lesson on and write about it without going though the experience of it? That's the readers choice. You have the freedom to read or not. You have the freedom to make your own opinion, and the freedom to then put action from it or not.

Thanks for reading.

PS:

Hello, as you may know we are currently trying to get a pancreatic cancer drug back on the list.

Please sign the petition, and thank you very much.

https://www.change.org/p/don-t-stop-funding-only-drug-for-pancreatic-cancer/u/13957786

A brave new day - Chapter two

WOW!

What can I say - I asked if you could afford a small couple of quid to donate to  Stand up to cancer and my aim was expecting a very healthy £50 pound.

So far it is at £588!!!

Thank you so so much! I just didn't expect that, and I am very grateful and shocked, I am sorry if I haven't said THANK YOU personally so, yet again, thank you...

And as a thank you... I wanted to give the next chapter in with the same donation. If you haven't donated and you would like to, here are links to the 3 charities that have helped me and also made great changes.

Pancreatic Cancer Action
Our focus  is on improving early diagnosis of pancreatic cancer and improving the quality of life for those affected by pancreatic cancer. 

Pancreatic Cancer UK
Pancreatic Cancer UK is the only national charity fighting pancreatic cancer on all fronts: Support, Information, Campaigning and Research.

Stand up to cancer (Cancer Research)
Stand Up To Cancer’s (SU2C) mission is to raise funds to accelerate the pace of groundbreaking translational research that can get new therapies to patients quickly and save lives now.

Chapter two: - Nan





Sometimes in my mind I was not in that hospital bed, but in bed at my Nans house, 28 years ago. 

The radio playing as it did do on the small wicker table acting at a bedside cabinet. BBC radio Leeds playing classical music, and the tall handmade light stand giving a relaxing feeling, the room glowing slightly and I knew i was safe. 

My Nan would put her head around the door, turn the radio off, give me a kiss good night, and leave the landing light on, I didn't like the dark. 

A young, very concerned looking nurse woke me up. “Carl, we have noticed that you are losing quite a lot of blood, The surgeon is on his way in to see you, it is 2am, you have to go back into the high dependency unit”. 




It was only 2 days out of the high dependancy unit and 4 days after the operation, a mixture of the drugs wearing off from my operation the day before, and the morphine taking the current pain away was making me dazed and confused, but still I could tell that it was important what was happening, I could tell by the nurses face, her concern was deep. I could also tell by the way I felt and this was the closest to death I have been. 

I had lots of bottles attached to me, all collecting liquids from inside me from the aftermath of the operation which all had to be measured. Waking up, and falling back into sleep. I remember seeing my surgeon, he told me that I was losing quite a bit of blood and there was internal bleeding, I will have to be re-operated on. I was having a blood transfusion now and he was going to be back at 9am, he told the nurses that if my state changed, call him straight away. 

The NHS staff have always been amazing, a lot have become friends, but throughout my journey there are so many NHS staff that have really gone out of the way to help, and I am in awe of them. 

Later on that day, a doctors was giving me the pre-operation epidural, this paralyses the area so they can operate pain free. They tested if it was working by sticking a small pin into my chest and seeing if I felt the pain. I am not sure why I did this, I was confused by the blood loss and the medication.

I told them i could not feel it even though I could.

I went back in to be operated on for the second time in two days, and also for the second time I was being woken up to find out about some complications.  As the anaesthetist started to wake me up I drifted slowly back into our world, and slowly started to feel the large open wound across my stomach. I am not sure how I let the doctors know, when you have pain as intense as that, it almost acted like a barrier., your body goes into panic, the adrenaline kicks in, in my head i was bent over, but due to the scare that would have been impossible. 

One of the problems was that to stop the pain they needed to get morphine into my system but they can only give it at a certain amount per hour as too much too fast can kill. Gradually the pain started to lighten, and gradually the morphine was working. But at the time, it was this experience, even more than the cancer which had impacted me the most. 




2 months later




I sat alone in my car, outside my Nan's old house, she has been dead for over twelve years, it was close to midnight. I was trying to work it out, what the hell that was all about. 

Before I left the hospital, the specialist nurse told me that, when I leave hospital, that’s when it would all hit me. Wow, she was so right. I looked out of the car window, and looked at the house where my Nan used to live. When she was coming over to my parents’ house, Nan would be sat in the window, hat and coat at the ready, waiting for me and Mum to pick her up. We were never sure how many hours, or indeed days she was sat there ready, both me and my mother are never that good at keeping time, it could of been weeks! 

What I would give for her to open the door, and let me in, and explain what the hell was going on. I then for the first time broke down.

I spent quite a lot of time with my Nan, we were very close, our friendship was strong from my birth to her death, she was in her late eighties when she died, and i was early twenties. 

My Nan didn’t just give me love, she gave me reassurance and I felt safe at there. 

I never met my Granddad, as he died very young, and she was young too. My Nan brought her daughters up by herself.

My Nan’s name is Flo, short for Florence. Flo, due to circumstances was very much an independent woman before her time, but at the same time showing so much strength to bring her own family up single-handedly. She was also reserved and quiet and to me she was my Nana and she was amazing. If and when she sees me again, I just hope she approves. 

We used to go on days out, we would get up early, go to Leeds bus station and just get a bus. Now I realise we didn't go that far, but then, at the age I was, it felt like the longest bus journey ever, but I used to love it, because with my Nana, you didn't need the entertainment of an iPad. We had games like Beatle, where you had to shake a dice and each number represented a different part of a beatle and the first one to build a full body, 6 legs and head of a Beatle was the winner! Ok, like I said, they were long journeys, but ones that I have very fond memories of as I loved spending time with my Nan.

Our days out were through the summer months and started from when I was aged around seven and went well into my teens, we enjoyed each other’s company, and she used to walk and walk. 

I did have my Nana around my little finger a little bit, while all the kids at schools parents where failing at making the dick tracy island from blue peter, we were making successful Ouija boards! - When i say successful, it had letters and a glass, we would just sit there for hours, hands on the glass, and waiting. Is any body there? anybody? hello? anyone? the only thing I can say is, it made us both appreciate playing Beatle more! 

I got out of the car and went for a walk, tears still rolling down my eyes, I could barely work out that the place had gone downhill. The grass seemed overgrown and the area unkempt. What was I doing there? Is there an answer? I suddenly stood in some dog shit. Was this a sign from beyond the grave? Was my Nan trying to send a message, to confirm that I truly now am in the shit! I am not sure why, but this seemed to lighten my mood! While wiping my foot on the long grass, I stopped crying, I don’t think it was a message from Nan, but maybe it is a message! I went home...

So what have i learnt from this cancer experience? 

I have learnt if I went back time, I would stop smoking a lot earlier than I did, I would stop drinking alcohol, stop eating sugar, stop eating meat, dairy and become a nun, and then after all that, if i was waiting for the results, wearing a black gown, with a white collar and the doctor says “sorry its cancer” I would punch them and go back in time again and smoke more, drink more, each pure sugar, nibble on a dead animal, and wash it all down with a very large glass of meths, and depending on if the outfit suited me, then, maybe stay dressed as a nun. 

For the past few years I have been writing a blog, I am not one of life’s readers or writers, but it has its own art form. A few years ago It was confirmed I had dyslexia, and for a year went to a dyslexic college. But by writing things down I found really helped me deal with it all, and I really enjoyed it! 

I write to sometimes just get out of my system and i have found, for me, it’s the best way of therapy. I have had encouragement to write a book, so here it is! written slowly, bit by bit. 

When I was younger I did read a lot of self-help books, I loved them! I was not practicing them; I just wanted to believe in their magic. Some are great, some are well, imaginative but I have never read a bad one. Even the off the wall Louise Hay claiming by repeating affirmations to yourself can get rid of the most terrible dieses. I did give this ago when I was younger, did it get rid of my spots, well… to be fair the only thing it gave me was lock-jaw, but did it make me feel better about myself! well no…. but if anyone hears you in the bathroom repeating the words “I love myself and believe in myself” over and over again, you at least don’t get interrupted! A number of self-help books are about instinct, about following your head and heart, sometimes you may even question it yourself, but if you have an inclination that you have a hunch, just follow it. I am going to take that principle, to write this book, and if it doesn't work, well i will find out who wrote that book and we can both ask for a refund. 

My instinct is pointing me back to where my Nan lives, and I am not sure why.